View Full Version : Anyone here with kids on Intuniv?


Momzilla
01-08-10, 01:40 PM
My 9yo son is having appetite loss problems on 40 mg. Strattera. At the same time, 40 mg. does not seem to be quite the right dose--he only gets about 20-22 hours of symptom relief.

Our doctor has suggested Intuniv, a new med by Shire (which he is paid to shill, as he fully disclosed to us at the outset). Since it's so new, it's hard to find info from actual users on effectiveness and side effects.

Has anyone out there tried this? What have your experiences been--good, bad, or indifferent?

TygerSan
01-08-10, 02:21 PM
Hi,

Sorry I don't have personal experience with this medication. While Intuniv is new, it might be helpful for you to look up ppl's experience with Tenex (guanfacine), as the active ingredient in the medications are the same.

Vickie
01-08-10, 05:12 PM
Intuniv is a long acting form of guanfacine (Tenex) which has been prescribed off-label as a 3rd tier med for ADHD. There is more information in the medications forum under "Clonidine" which is a similar med.

My youngest was on guanfacine (the short acting generic) and had some benefit on it alone, especially with hyperactivity and behavior. She tried concerta alone, concerta plus guanfacine and guanfacine alone. The best treatment for her was low dose stimulant and guanfacine. We did not go to a high enough dose of concerta for full effect due to weight loss in an already thin child so the guanfacine was added to augment the stimulant and help with behavior, ODD, etc.

Justtess
01-08-10, 10:21 PM
Our pdoc offered Intuniv at our last visit also. My DS16 was on Tennex until December when he complained of pressure behind his eyes causing pain. The pain disappeared after discontinuing Tennex. I wanted some time to think about the medication before adding it to the mix. Tennex seemed to have helped with irritability.

It would be great to hear how this affects other adders. After trying Abilify last year which had both positive and negative results, I would hate to try something new on the market.

JenE
01-11-10, 01:58 PM
Our doc has mentioned it but since it only hit the market the first of November 2009, she doesn't want to try him on it yet. He already takes 1.2 mg of Tenex twice a day for impulse control which works well for him so we (us and the doc) wondered if the long acting form would work even better for him. He also takes 40mg Strattera and 10mg Lexapro. She wants to observe her other patients on Intuniv before trying it for us.

fancherml
01-13-10, 11:32 AM
My son is on week #2 of Intuniv. So far, it is the best thing I have found for him. He is 8, impulsive/hyperactive/inattentive and has been on Concerta (stopped after he developed "rages" and ODD-like symptoms). We then went to Focalin 15mg, but the same symptoms developed. He is now on Focalin XR 10mg and Intuniv 2mg each morning. The doc wants to get him off the stimulant and just keep the Intuniv.

The BIG things I am noticing are:

Morning, morning, morning!!! His mornings are usually a nightmare until the meds kick in. Not anymore. Now that the Intuniv is there (it is still working in the am), he is like "good morning mommy, may I have some eggs, please?" I can't believe it. Usually I am pulling him off his brother by 730am. He no longer screams at me that he hates me.

Also, his impulsivity is non-existent. It used to be our biggest problem. So much so that I would take a raging child who wouldn't take my car out for a drive rather than a non-medicated version who was a little less angry but taking a spin in the honda. (not really driving the car, but it was bad)

Sleep. He goes to bed at bedtime and goes to sleep. On the other class of meds, he went to bed at 730pm, but was still awake at 10pm. Not acceptable to me. He appears more "tired" to me, but it doesn't hinder him at all. I was told that this is the main side effect (big whoop, says I).

Appetite is also better. I have to push fluids, though. At this point, he can have any water-based drink (ie juice and I am a "no juice" person....well things change...lol) and it is not really a problem.

I am VERY encouraged thus far and will keep you posted on his progress.

HTH,
Michele

JenE
01-13-10, 11:57 AM
Hey Michelle, sounds like great progress!! For our son, his teacher (and us) noticed much improved impulse control when we started the Tenex (which his dose is 0.5mg twice daily rather than the 1.2mg that ended up in my first post). So I'm curious to try Intuniv.

Is that all he takes? My son also takes Strattera which has really helped his focus and somewhat helped his impulses.

daveddd
01-13-10, 06:14 PM
2o-22 hours of symptom relief , i need to try straterra that beats the 8 hours i get off stims

fancherml
01-14-10, 10:39 AM
Hey, to clarify...DS is currently on Focalin 10mg and Intuniv 2mg.

JenE
01-14-10, 12:13 PM
Sorry, Michelle. I missed that in your original post. Hope he continues to do well! I think we'll discuss Intuniv with our dr at our next visit in March.

csmom
01-20-10, 02:12 PM
Hi MIchelle~
I have an 11 year old that has been on Intuniv for about 4 weeks. It is by far the best for controlling his impulsive mouth and temper. I agree that the best thing about it is mornings! He actually converses, eats, and gets ready for school without arguing! It helps his attention somewhat, but the irritability was what we were really trying to help him with. My one concern is that he is starving all the time and has gained 5 pounds! He is still fine because after 2 years of Vyvanse, he was pretty thin. I hope it is just recovering from the appetite loss from the stimulant and not a side effect of the Intuniv.....
csmom

kahumano
01-20-10, 03:57 PM
My daughter has been on it almost 4 weeks now. Well, when we're able to get her to take it that is. haha When she DOES take it.....it is such a relief!! We now have a peaceful household. The intuniv definitely helped with her aggression and her constant arguing and being destructive! It has also helped with her attention. Like CSMOM, she is now able to sit down and eat and actually hold a conversation. That's a first! I just wish it came in liquid or chewable form.

kayp
01-21-10, 09:41 AM
my son is 6 and has been on it for a month. He is a little more focused at school, but he is pretty irritable. We stopped at 2mg to see what school was like. seemed to be working,but he is definitely a little more bad tempered than he was. does it get better? is there a lessening as they move up the dosage? it took a few weeks for him tog et past the sleepiness of 2mg and i am loath to up it, if it does nothing.
help please! thx

momtoLandW
01-21-10, 02:40 PM
My 11yo son has been on Intuniv since before Christmas and we have liked the results. He had been on Tenex, but because of logistics we couldn't get him on a high enough dose. Now he takes the 3mg tablet in the morning and it does last all day. The arguing and temper have decreased (nothings perfect, but better is great!). It also helps with impulsiveness.

Jen E - how does the Lexapro work for your sons anxiety? My son is taking Zoloft, but I would like to switch him.

Justtess
01-21-10, 08:10 PM
I hope more people post their experiences with Intuitiv. I'm very interesting in hearing more.

JenE
01-21-10, 08:19 PM
MomtoLandW, the Lexapro seems to work really well for him. He had severe anxiety in the spring and it has greatly improved. We have not had any ill effects from it except when we tried to increase his dosage to 15mgs which made him VERY volatile. Once we dropped it back to 10mgs he's been doing fine! He takes it at night since he gets a little sleepy from it but it doesn't seem to impact him during the day.

Shawver83
01-22-10, 09:44 PM
My five year old was prescribed Intuniv today, we haven't started it yet. They want him to have an EKG first before starting it. His main problem is inattention and impulsive behavior, and because he's so small and underweight already they don't want to put him on stimulants. We'll see how it goes. He's also taking neurofeedback sessions five times a week, but that's slow going and probably isn't going to show results quickily enough to keep him from getting kicked out of school.

fancherml
01-23-10, 04:20 PM
Just an update here. My 8 yo DS is off stims all together and is on 2nd week of Intuniv 2 mg. Been on Intuniv for a total of 3 weeks.

The impulsivity and anger/aggression seem to really be in check right now. His appetite is "back to normal" for him and he sleeps.

I am still holding my breath and waiting for the other shoe to drop, but Intuniv really seems to be helping him. He now talks about "being happy" and that was not something he ever talked about before. :P

Since starting the Intuniv, he appears tired to me (red eyes, yawning), but he denies fatigue, sleepiness, or lethargy. Just thought that was interesting. Our MD said that increasing the dose slowly would minimize any side effects and so far that has been the case.

I hope this helps.....I am not usually one who writes posts on these forums. I am the master lurker. :0

Michele

Shawver83
01-29-10, 08:50 PM
My five year old started Intuniv last night for the first time, and had a great day in school for the first time in a long time. Only problem is that he seems really drowsy on it. They said he fell asleep in school for about a half hour today. This evening he seems a little subdued and tired to me. He's taking one miligram. Does anyone know if this drowsiness subsides after a while? I'm really hoping so!

JenE
02-01-10, 04:19 PM
Yes, the drowsiness should subside in a few days based our experiences with regular guanfacine. His body just needs to adjust. Monitor him and see if he improves over the next few days, if you are still concerned call his dr but I think you'll see him start to adjust soon. Good luck!! Keep us updated on his progress. I'm still curious about this med.

fancherml
02-01-10, 07:30 PM
Hey guys. Just an update.

8 yo DS is on 3 mg Intuniv now (this is day 2). I find myself starting to let my "guard" down. I can have a cup of coffee and read a book while he plays out front. Stuff like that. I don't have to watch him like a hawk lately. He can think things through before doing anything impulsive. When I say "go clean your room", he says "yes, ma'am". :eek: A month ago that question invoked an automatic meltdown.

The tiredness has decreased. We have ramped up the dose SUPER slowly (he was on 2mg for over 2 weeks). For now, that seems to be our main side effect.

HTH.

Michele

Kryistina
02-01-10, 08:58 PM
My 15yo is on her second week of Intuniv. As most of you here know, that means that she is on her first week of the 2mg dose.

She says that she notices no difference at all, and I am not sure if the differences that I am noticing are from the Celexa she is on, or the Intuniv, as she still seems scattered, impulsive, and has difficulty concentrating, flying from one topic/activity to the next. The positive effects of her new med mix are that she is less moody, less angry, and her violent rages are now completely nonexistent. She notices when she is feeling "off", and can now address that before it gets out of hand.

I was a bit miffed at her doctor for trying this when we were at a near-crisis state with her, and he said it can take up to a month to notice any difference at all. *boggle*

But that's my experience with it so far.

Shawver83
02-01-10, 09:07 PM
Just an update--the drowsiness disappeared like magic on day three. My son's behavior made a complete turnaround the first day on the medication. I notice that the starter pack says go to 2 milligrams after a week, and that's what most people are doing, but the doctor has him on one milligram for the first month. I think it's because of his size and weight, he's five years old and 42 lbs. I hope that the one milligram dose is enough to hold him and that he doesn't revert back to his old behavior before we get a higher dose, if needed.

JenE
02-01-10, 10:08 PM
lots of great progress for you guys! Thanks for the updates! Curious, were any of you using Tenex (regular fast acting guanfacine) before trying Intuniv?

I am curious to try it to see if it would last longer and give my son better coverage than the Tenex. But my pharmacist friend reminded me that I get the generic Tenex for $5 and the Intuniv would be more costly. Of course if it is better for him we would do it. Perhaps I can get a free trial coupon or a starter pack from the dr.

zak'smom
04-14-10, 08:31 AM
I am new to this site. My 10 year old son has been on Intuniv ER for almost 2 months. We started him in the mornings on 1mg, while also taking 100mg of Zoloft. It initially made him tired and unfocused. My doctor had me give him a very low dose of vyvanse with it. This caused him to be quite moody. After almost a month I increased the intuniv to 2mg and started to give it to him at night. I was also giving him vyvanse and then tried Ritalin LA during the day. Still moody. About two weeks ago, Easter Sunday to be exact, I decided to drop the stimulants, it was a holiday and I wanted a happy child. A happy and polite child is what I got! He has been wonderful and calm ever since. I give him 2mg of Intuniv around 6-8pm every night and 100mg of zoloft in the morning. We are hoping to lower the zoloft and attempt to slowly take him off of it by the summer time.

The downside of all of this is the fact that I have noticed a substantial weight gain. I don't know if the drug itself has caused it or if he is over eating and I did not notice, because I am so used to him being skin and bones due to all the stimulants he has taken over the last five years. I have reported the weight gain to the pediatrician and to the psychiatrist. We are going to carefully monitor it.

Has anyone else noticed weight gain from Intuniv?

Shawver83
04-15-10, 09:07 PM
My five year old (six in May) has been taking Intuniv for about three months now, and has been on 2mg for about a month and a half. I haven't noticed any significant weight gain though. He's kind of small for his age, and is a VERY picky eater. That's one reason we're hoping he continues to do well with Intuniv and won't need any kind of stimulant; the doctors were hesitant to give him those as I guess they tend to cause weight loss and he really doesn't have any to lose. I have noticed that his appetite seems to have improved a little since the Intuniv. Not a whole lot, and he's still picky and still eats way too little, but we did notice that it seemed like it picked up a slight bit.

Momzilla
04-29-10, 09:01 AM
I've just come back to this thread after a long, successful period on Strattera.

To update from my first post, we increased his dose of Strattera to 25 mg., twice a day, and it worked great for several months. We are starting to notice the uncontrolled emotions creeping back in again, so we are going back to the Dr. today.

From what I'm seeing here, we may well give Intuniv a try. It sounds like it's working pretty well for most kids, and addressing the rage which is DS's biggest problem.

I'll let everyone know how it works out!

musikat
04-29-10, 09:37 AM
I'm glad to see this thread back, too. We are on day 3 of Intuniv + Focalin XR 5mg. So far not much to report, although he seems to be a little more "even" emotionally than he was. Still hyper, though. It's early days yet, though.

I may be changing the stimulant after I hear from his teacher and talk to his doctor. I don't feel we've ever had good response with Focalin but we did with Vyvanse (for a few days at least). It's seems like such a crap shoot to find the right combo and dose!

Momzilla, is your child hyperactive/impulsive as well as inattentive? My ped seemed to think the non-stimulants only work for kids who are ADD not ADHD, but I am reading different on this and other boards. That is why I pushed to try Intuniv. Let's hope it works!

hyl2
04-30-10, 01:09 PM
Our 5yr old son has been on intuniv for 3 weeks now. We are deciding whether 1mg or 2mg. Overall, it has been amazing. He is much calmer, many fewer arguments, more compliant and pleasant to be around. At school, the aggression and impulsivity are way down, and he is more willing and able to participate in group activities. Overall, we're very, very happy. It is the first time we feel like a normal family, able to allow him to go on playdates even with people we don't know REALLY well, able to take our family out in the evening without worrying what might happen, etc. At bedtime, he isn't all jumpy and nervous energy when we read him a story. When I leave the room, it's a simple "goodnight daddy; I'll see you in the morning." He wakes up quietly in the morning (no longer waking up his two sisters with high pitched singing and thudding around), and nicely comes to ask for breakfast, maybe even playing quietly for a bit first.

The main thing we are watching is tiredness and the general slow-down effect. He also seems to be a little sensitive. In a sense this is both a feature and a bug. We aren't overly concerned with it, but our big fear is that by treating his adhd we are losing the part about him that is special--the excitement, the zest, etc. These have self-destructive elements, but also make him the neat kid he is. So right now we aren't feeling like we're losing him, but that's what we're watching out for.

Also, as I posted previously, we are seeing a few tics and are trying to figure out whether it is a coincidence or not--and whether he's just had them all along, but we were just too focused on the aggressive and impulsive behaviors to really notice or worry about them. Guanfacine isn't supposed to cause tics, and is in fact used to treat tics sometimes in adults; but teachers have noticed some ecalalia and we have noticed him making some strange faces. We don't think it is related to the meds, but we're keeping an eye on it.

FWIW, stims were terrible for us. The focalin made him incredibly emotional and high strung, even at a low dose; and the other one we tried was only slightly better.

All in all, the intuniv has been a miracle, and like everyone else, we're just always on our toes for any concerns.

TygerSan
04-30-10, 02:41 PM
Also, as I posted previously, we are seeing a few tics and are trying to figure out whether it is a coincidence or not--and whether he's just had them all along, but we were just too focused on the aggressive and impulsive behaviors to really notice or worry about them. Guanfacine isn't supposed to cause tics, and is in fact used to treat tics sometimes in adults; but teachers have noticed some ecalalia and we have noticed him making some strange faces. We don't think it is related to the meds, but we're keeping an eye on it.

Is he on a stimulant as well? Sometimes the stims umask tics. . . he's also getting to the age where, if he has something like Tourette's or another tic disorder, he'd start showing symptoms (usually around age 7 or so).

musikat
04-30-10, 04:31 PM
I talked to my son's pediatrician today and we are taking him off stimulants for now and doing Intuniv only (sent him to school today on only Intuniv because we really weren't liking what we were seeing on the Focalin), at least until we can get him to a child psychiatrist who has more expertise in medications. His teacher said he had a good morning today (saw her this afternoon at a special event at school) and had fewer errors than usual on his spelling test, so that is a good sign. So far this afternoon he is definitely calmer and more "even," too, so maybe we'll get lucky and be able to use just the Intuniv. Here's hoping!

musikat
04-30-10, 07:29 PM
One more Intuniv question. Everything I read says you are supposed to go up to 2mg after 1 week. Do you have to? I mean, if he ends up having good effects at 1mg (and it presumably still takes several weeks for it to reach maximum benefit) why go up? I will probably eat my words tomorrow but his behavior today has been every bit as good as our "golden week" on Vyvanse (40 mg), so I am just wondering if there is a reason behind the weekly titration?

Lady Lark
04-30-10, 09:03 PM
It can cause drowsiness, so it's a good idea to let them adjust to a lower dosage before increasing it. Don't want them falling asleep in school. :)

Ruffals123
05-05-10, 08:19 PM
My 6 yr old has been on Intuniv 2mg now for 4 weeks. Started on 1mg for 1 week & then went to 2mg for the remaining time on it. This is the protocol for this drug to go up 1mg per week until you find the correct leveling out in your child's system. I have seem dramatically positive changes in behavior & no more defiance & a better overall mood. Much happier now, many more "please" & "thank you's" instead of "I hate you", literally, I am not kidding. I have noticed a lot more sleepiness, usually gets about 12 hours of sleep compared to the 7-8hrs before Intuniv. Obviously a 6 yr needs more sleep than 7-8 hours so I do not view this as a bad thing. The doctor suggested doing 1mg one day & 2mg the next to offset the sleepiness. This was an absolute disaster! Do not do this even if recommended by your doc. The child's system gets used the the dose they are on and they feel & act horrible if you cut the dose in half. It was disastrous & it only took one day for us to figure out that cant be done. This is not the kind of drug that the child can "take a vacation from" like many of the stimulant drugs. Once this drug is started it must be continued or weened off slowly. This drug once started seems to have a lasting effect in this system. It is not like many other ADHD "in-out" drugs. For all intensive purposes this almost seems like a magical pill. I literally had a happy, nice, cooperative child within the first day of my child taking it.
I have a child who has been diagnosed for now with ADHD. I personally think it may be co-morbid with depression or ODD. We are waiting to get more info from new specialists very soon.
Hope this helps anyone considering Intuniv.

Ruffals123
05-05-10, 08:25 PM
One more Intuniv question. Everything I read says you are supposed to go up to 2mg after 1 week. Do you have to? I mean, if he ends up having good effects at 1mg (and it presumably still takes several weeks for it to reach maximum benefit) why go up? I will probably eat my words tomorrow but his behavior today has been every bit as good as our "golden week" on Vyvanse (40 mg), so I am just wondering if there is a reason behind the weekly titration?

If you go in the Intuniv site there is a very small percentage (maybe 3%) that can actually stay on the 1mg. However, if you are having very positive effects with 1mg more than 1 week on it then stick with it until you see the leveling out.
My child is on Intuniv 2mg, started out on 1mg and I remember the 7th day when the leveling out occurred, it was as if someone had burst the happy bubble and the angry, depressed child came back. If you have not seen that yet then your child may be the small lucky percentage that can stay on 1mg.
Wishing you all the best, I know this isn't easy.

musikat
05-05-10, 09:22 PM
Thanks. We did go up to 2mg yesterday. I was noticing an "uptick" in hyperactivity so I figured we would give it a go. This is day two. He is definitely calmer and we'll see how it goes as he adjusts. He actually asked to go to bed tonight which is a first in his LIFE :lol. His teacher said today that he is staying at or near his desk more and not calling out in class but that he is working "slower" than he was on the Vyvanse. I do notice that he still seems distractible and it is just as hard to get his attention to tell him things, so we may end up having to combine it with a stimulant but overall I am liking it for the calming effect on the activity and behavior. He has an appointment with a psychiatric nurse practitional May 18, so I figure that will give us a good 3+ weeks on Intuniv to see it's effect and decide whether we can stick with just the non-stimulant (I hope so!).

andremike
05-06-10, 09:53 AM
How is Intuinv wiorking for you people if your child has ADHD the inattentive type?

Spence's Mom
05-06-10, 10:40 AM
We are going to be changing up meds as soon as school is out. I think I will be researching this and finding out if this is a good next step for us...this is a great thread for me...thanks to all who contribute.

Lv2sleep
05-06-10, 07:12 PM
I guess I should have posted here first, but we started on 1 mg today with horrible results! My DD threw tantrums and was super emotional and defiant... Much worse than usual... She is also on Focalin xr 10 mg.. It was almost as if she was a different child. I thought Intuniv was supposed to help with moods. Any thoughts?

Ruffals123
05-09-10, 10:12 PM
Hi, I saw that you upped your son to 2mg. My child just had a visit with the Neurologist on Friday to get the results of the EEG we had done. Thankfully, everything came back normal. My child had a major head trauma with a cranial bleed at the age of 4 so when we got the ADHD diagnosis it was suggested that we have an EEG done to rule out any tempural issues. I found out something very interesting from the Neurologist the most effective time of the day to administer Intuniv is at 6:00pm. This was news to us since we had been administering the drug at 8:00am in the morning. The Neurologist was in shock that we had been told by our Pediatrician to administer it in the am. It is no wonder my child seemed drugged out all day to me & most everyone else for the past few weeks because it was my child to fight the drowsiness all day. The Neurologist said Intuniv has a 22 hour half life??? Whatever that means. Also to all you people who are paying out of pocket for this extremely expensive drug, you should ask your doctor for the "Intuniv Starter Kit". This kit is from "Shire" the drug manufacturer & includes 2 sample bottles with 7 pills each and a $50.00 off card for your child's next prescription & tons of pamphlets with all kinds of information on the drug including: Safety Info, A Parents Guide to getting started, In Progress with the Meds, Titration Guide & Free ADHD Support. Hope this helps.

Lady Lark
05-10-10, 11:41 AM
How is Intuinv wiorking for you people if your child has ADHD the inattentive type?

It's my understanding that it's works better for controlling the hyperactive, rather then helping focus for the inattentive.

Lv2sleep
05-11-10, 08:42 PM
We are finishing our first week on Intuniv. I haven't seen any positive changes yet. My daughter has been complaining of tummy aches though. Has anyone here experienced the constipation issue with their child? If so, what are you doing about it?

JenE
05-12-10, 09:01 AM
Talked with my dr about Intuniv on Monday. She said they haven't seen very good responses in their patients (the side effects are far out-weighing the improvements) and it's very expensive. Based on those things, they generally aren't prescribing it. We already take Tenex twice a day which we get generic so it's only $5 per refill. It seems to be working along with his other meds so we are going to stick with it.

hyl2
06-04-10, 07:56 AM
Unfortunately, it looks like our experiment with intuniv is coming to an end. We had a wonderful start with it (read my earlier posts!), but the positive effects seem to have worn off. We have tried titrating up to 2 mg (which is a lot for our little guy), but the med seems to no longer affect his behavior--and now he walks around a bit like a zombie, with his eyelids drooping and his speech slightly slurred. We are going to give it one or two more days, and then it is back to square one.

The stims don't work on him (he gets WAY too emotional), and now neither does intuniv. Any idea what comes next for a five year old with ADHD combined type (though we are more concerned with the hyperactive at this point, because in him in displays as aggression)?

JessesMom6
07-10-10, 01:59 AM
My son started on Intuniv in March 2010. I too noticed my son is more difficult to manage at home... more "ocd" symptoms more "argumenative" more "perseverative behaviors" than before the Intuniv. He is on 2mg every morning. His teachers we THRILLED at the difference in his ability to "relax and focus and transition" but My husband and I are not as convinced. He has gained 10 lbs since going on the med. The Pediatricia says we can "watch him" maybe add another med to manage the side effects of this one...NO THANKS! I'd stop this one.
We have not noticed a change in his eating. He has Autism (high- functioning... lives on a very select menu as it is...) It is so difficult to know what to do. to be sure you are doing what is BEST.

bunkie68
07-15-10, 10:31 AM
It's my understanding that it's works better for controlling the hyperactive, rather then helping focus for the inattentive.

My son is 7, almost 8, and we've been on Intuniv for a couple of months now. He's combined ADHD, and the Intuniv really helped him focus in school - I got good e-mails from his teacher, and he ended up with an E in conduct in the last six weeks of the year, which is just amazing for him. He'd tell me it would help him focus better, so at least for us, it's helped with the inattentiveness as well as the hyperactivity. He was tired the first few nights (which was awesome - bedtime is always a struggle, so it was great for us that he zonked out around 8:00, no fuss, no muss!), but that didn't last too long.

That being said, lately I've noticed that he's a lot more moody/emotional at the end of the day when the meds are wearing off. He gets angry over things, he gets emotional and upset over things, and this lasts pretty much until bedtime. I don't know if this means the meds aren't working as well as they had, or if he needs more of the Intuniv (he's currently on 2 mg), or if he needs something instead of or in addition to it. I'm going to talk to his doctor and see what she thinks.

ADHDTigger
07-15-10, 02:13 PM
Bunkie, that really sounds like rebound affect to me. It may be that he's crashing instead of getting a smooth transition.

bunkie68
07-15-10, 02:23 PM
Tigger, is it possible for that rebound effect to develop over time? I didn't notice him having the excessive moodiness/irritability for the first little while on the Intuniv. And what can be done to help ease the effect, if that's what it is?

Manoa
07-21-10, 05:44 PM
The stims don't work on him (he gets WAY too emotional), and now neither does intuniv. Any idea what comes next for a five year old with ADHD combined type (though we are more concerned with the hyperactive at this point, because in him in displays as aggression)?

I'm an adult combined type - inattentive/impulsive, and take Vyvanse. That's been fine for a number of years, but I've had recent problems and my doc started me on Intuniv for anxiety. So I'll be taking 2 meds, and I think of Intuniv as a non-stim boost.

Momzilla
07-27-10, 11:26 AM
An update from me -- we started my son on 1 mg. Intuniv and have gradually moved up to his current dose of 3 mg., taken at dinner time. Initially, the drowsiness was awful at each dosage increase, but it has worn off (he was drowsy for about a week when we went up to 3 mg., and then the drowsiness just disappeared).

So far he is doing well. No meltdowns/rages, and he snaps less at his little brother (whom he used to hound constantly). He is cheerful and helpful without being asked (for example, he helped his little brother extract his bike from the garage the other day) and his appetite is great.

We won't know about how Intuniv affects school work until school starts in mid-August, but for now we are pretty pleased.

zippy03
07-27-10, 01:33 PM
Momzilla,

That's great that your son is responding so well to Intuniv. How long did it take for you to see clear results?

We started off with Vyvanse, then went to Focalin and now on Intuniv. He did not do well with the stimulants at all. He is on 1 mg of Intuniv, been on it for three days now and I don't see any change yet. He is not sleepy, he's actually more hyper. He snaps at his twin brother/sister (they are fixing to be 2), and he just turned 7.

I think my drs office is getting sick and tired of me calling and asking questions like is this normal, should we up the dosage, etc.

How did you know when it was the right time to up the dosage for your son?

I am too worried about him entering 1st grade, I am just waiting on a miracle to happen.

musikat
07-27-10, 09:22 PM
Zippy,

Sounds like your son and mine are on the same track. We, too did Vyvanse then Focalin with bad results (tics, and behavior issues). My son is a little older (8 1/2 going into 3rd grade) but we are currently doing Intuniv 3mg only. We saw some hints of response with 1mg (a little calmer, mostly) and then upped it to 2mg and now 3mg. The "magic" has worn off but he is still less hyper and a little better at listening (emphasis on "little"). It's not perfect but better than with no medications. Our next step might be to try
Strattera.

Momzilla, we have found that Intuniv helps his hyperactivity by quite a bit but does literally nothing for the focus. I hope your son has a better outcome when school starts.

Momzilla
07-29-10, 10:29 AM
How long did it take for you to see clear results?



The late-afternoon rages went away immediately, but he remained very cranky (and particularly snappish/mean to his brother) until we hit 3 mg.

I have also noticed that Andy is a little more hyper now that the drowsiness has worn off--not in a bad way, just more talkative than I am used to him being.

One of his big issues is ceasing an activity when we ask him to, and not when *he* decides he's done--the cause of a lot of pre-diagnosis tantrums. On Intuniv, we still have a hard time getting him to leave off an activity, but we don't have a tantrum associated with it.

Musikat, bummer that Intuniv doesn't help your son with focus. This is our last stop before a stimulant, so I'm really hoping we can stick with it for a while.

bunkie68
08-01-10, 10:50 PM
Update on my son: We're almost finished with our first full month at 2 mg, and I don't think it's going so well anymore. Today when we went grocery shopping, it was just like he hadn't taken his medicine at all. He was loud, talking non-stop, making big movements without noticing whether there were others around, touching ev.ery.thing, and just pinging off the walls. In church this morning (about three hours after he took his medicine), he decided to try doing interpretive dance during the choir's special music. (We go to a Baptist church - interpretive dance in the aisles is not generally practiced or encouraged.) He wouldn't be still and left to go to the bathroom several times (I don't think he really needed to go all those times, but it was an acceptable reason for him to be up out of his seat). And he is CRANKY at the end of a day - like, raging cranky at times. Tonight he said he was tired and ready for bed, but before he got there, he noticed the movie that was on and said no, he wanted to watch it. It was 9:00 at this point, and he wasn't going to stay up and watch a movie until 10:00 or later, and I told him no, it was time for bed, remember, you were just saying how tired you were. Enter the rage. He thrashed around and howled and swung at me and sat down and wouldn't budge for a while, and then when he finally got in the bed, he thrashed and grumped and said he wanted to watch the movie. I told him no, the movie wasn't an option. He threw himself around some more and thrashed his arms around and hit me in the process (not hard, but still - I told him that was enough of that, he did not hit me). He finally threw himself half on, half off the bed, and started to settle down at that point, and finally got into bed and went to sleep. But dang, it shouldn't take all that time and all that emotion to get him to bed when he knows and admits that he's tired.

I'm going to discuss all of this with his doctor. I don't know if this means he needs to go up to 3 mg, or if we need to try something instead of or in addition to the Intuniv, or what. I do know that if he went to school like he was today, they'd be sending him home before lunch.

JenE
08-02-10, 11:07 AM
Hey Lisa, thanks for the update. Is this behaviour becoming the "norm" or can you tie it to events like being overtired? I would definitely call the dr. It could be that you do need to bump to 3mg or you may need to try something else. My psych has mixed reviews on Intuniv--the results they are seeing are less than optimum. We still take a very low dose of Tenex just to help add a little extra leveling on the impulses and to help him settle in at night.

Keep us posted.

bunkie68
08-02-10, 11:12 AM
Jen, it's becoming the norm - doesn't matter if he's wiped out tired or got a good solid night's sleep. I called our doc this morning - we have an appointment tomorrow morning, and she thinks we'll likely need to bump the dose up to 3 mg. When we moved up to 2 mg, she said then that based on his weight, the dose should be 2.5 mg, but since Intuniv doesn't come in that dose, we went with the 2 mg. School starts in three weeks, so hopefully this will give us time to get things tweaked a little before he's back in a classroom setting.

JenE
08-02-10, 01:04 PM
Glad you called the dr and have an earlier appt. Hope the dose bump helps. Let us know what the dr says tomorrow?

bunkie68
08-02-10, 01:06 PM
I will. Thanks. :)

Lv2sleep
08-02-10, 08:04 PM
We met with my child's psychiatrist today and I asked about Intuniv. She said she rarely prescribes it because it doesn't work well, in her opinion. Our pediatrician had more mixed results with it, but it didn't work for my daughter (she was on 2mg)...

bunkie68
08-09-10, 09:17 AM
I forgot to update! Our doctor said that a bump to 3 mg may help - given my son's weight, 2.5 mg is supposed to be the ideal dose, and 2 mg clearly wasn't enough. I've noticed a little difference. He's not quite as pingy. He still gets moody in the evenings, but maybe not quite as badly? We go back on the 20th for a recheck.

bunkie68
08-12-10, 10:43 PM
So it's been about a week since we started with the 3 mg. My son has fallen asleep at 7:15 or earlier the past two nights. This is almost unheard of. Could it take a week for a side effect of the meds to kick in? When we started with the 1 mg of Intuniv, he had a couple of drowsy days right off the bat, but then it wore off pretty quickly.

zippy03
08-13-10, 10:08 AM
My son has been on Intuniv for 3 weeks, have not seen any good results, he seems actually worse. So we had his check-up yesterday, they decided to put him on 2 mgs, when he started off on 1 mg. I don't see this is going to help, but they said to give it 5-7 days to work, if it does. I am frustrated, he has lost a pound in 3 weeks, but his appetite hasn't changed. He is still bouncing off the walls, not sleepy at all, which I heard was a side effect, I am just about at my breaking point, school starts Tuesday and I am praying that he'll somehow get better before then, but I think I am not being realistic about it. He tried Focalin, didn't work, then Vyvanse, didn't work either. I'm so ready for a change!!

bunkie68
08-14-10, 03:33 PM
Today, in some ways, it doesn't seem like my son has taken his meds at all. He's grumpy, irritable, sometimes pinging off the walls, and - most unusually - he's tired. He fell asleep in the car while we were running errands. Days like today make me wonder whether the ADHD diagnosis is correct in and of itself, or if we're dealing with something in addition to, or instead of, ADHD.

zippy03
08-15-10, 10:23 AM
Bunkie,

I am so sorry, I am in the same boat as you are, so please don't feel alone in this. I am wondering the same thing if we are dealing more than ADHD. I do not see any improvement at all with the meds, but my son is not sleepy at all, which I thought was a side effect especially with going up on the dosage. When does he go back to the dr? Have you thought about getting a second opinion? I will pray that things get better for you.

bunkie68
08-15-10, 06:26 PM
Zippy, we go back on August 20th, so this coming Friday. We've had two opinions so far - our regular pediatrician and a clinical psychologist. I find myself wondering if now we should look for yet another specialist to offer an opinion. And there are times he just seems so out of control, just unable to be any kind of patient, unable to wait when need be, and unable to keep himself from getting very emotional and out of control. He fell asleep in church today. I don't know if that's becoming his mechanism for coping with a situation he doesn't want to be in (he tells me he doesn't want to sit through the Message from God's Word, that it's too long), or if he was really that tired. When we started the Intuniv, he got drowsy at the end of the day at first, but he never fell asleep during the day. So, is this not the right medicine for him after all? Or is there something else at play other than ADHD? Gah.

michele223
08-16-10, 12:57 AM
We have been on 3 mg of intuniv for a few months for my 8 yr old son. Before this he was on tenex 1 mg 3 times a day. So the intuniv should last 24 hrs. and is supposed to help since it shouldn't wear off. My thoughts are that it sometimes seem to work better some days then other days. I don't know why. He will randomly fall asleep if he relaxes. He also takes prozac and risperdal. Sometimes his focus seems better but other times he seems impulsive and anxious. My son has comorbid disorders ADHD, tourettes, OCd and aspergers. He doesn't respond well to stimulants. He does have tics that sometimes wax and wane and some new ones have come out while on he intuniv. We see a psychiatrist every month. It is frustrating and I wish the meds would work better and stay working. Sometimes they work in the beginning and then stop working at all.

bunkie68
08-16-10, 07:33 AM
So yesterday during the earlier half of the day, my son was restless and emotional and out of hand. Yesterday evening he was pretty pleasant, and helpful without being asked 87 times, and didn't grumble too much when it was time to turn off the video games or the TV or go to bed. I can't wrap my brain around it. It can't take the meds half a day to kick in. Can it?

zippy03
08-16-10, 09:23 PM
Bunkie,

It is really confusing, that's for sure. My son was pretty calm today, a heck of a lot better than what I have seen in a long time, but I just don't understand it either. He'll probably be horrible tomorrow especially since it's the first day of school.

I hope your son has another good day tomorrow.

aimlesss75
02-10-11, 02:06 AM
my 8 yr old has been on this for almost a year. in the beginning it was wonderful a night and day difference. after the tantrums and mood swings i dealt with on adderall it was like he was a different child. the screaming fits had almost completely gone away and he was doing much better in school. having said that he has back tracked the last couple months, gained 30 pounds(he seems to always be hungry), and i have gone back today and had it raised to 4 mg(he had been on 3mg for about 8 months) 4 mg is the highest you can go on this med. he has been on this alone as his doc and i were trying to get him off stimulants, but the "wonder med" seems to be wearing off and the "i hate you" fits have came back. will post again in a few days, after he starts the new dose tomorrow

kit-kat
02-10-11, 09:16 AM
My son has been on Intuniv for 4 months now. So far we are very pleased with the results. He started out a 1mg. We were going to increase after a week but waited almost a month instead. He was very tired for the first 3 days and then the fatigue dissipated. He were seeing good results but it stopped working around week 3. We then increased to 2mg and we are still on that dose. We love love love most of the results we are seeing (better focus at school, less aggression, better social interaction). The only downfall to the 2mg is that he still has the fatigue. It usually sets in after he is home from school. If possible we let him take a nap(unheard of before the meds) for 30 minutes (no problem with bedtime on nap days either). That seems to help a bit. Homework can still be a chore because of the crankiness, but I try to spread it out a bit during the afternoon to make it go smoother. I asked the Doc about the fatigue but he didn't think there was anything we could do to counteract the fatigue, except possibly upping his bedtime so he gets more sleep. I just took him to the ped yesterday and he is checking his blood sugar levels and iron levels, just in case it is not the Intuniv. I, personally, plan on keeping the med even if this continues because I feel the benifits outweigh that one negative. If the fatigue starts affecting him at school then we will have to look at something else.

ccom5100
02-14-11, 10:57 PM
Our insurance won't pay for Intuniv, so my 11 year old is on Tenex. He takes 2mg in the morning before school and 1 mg at about 5pm. We worked up to this dosage over a month's period. He's been on the 3mg/day for about 3 months and it is working well. We have a 30 minute drive home from school each day and he usually catches a catnap on the drive home. His last period teacher has told us that he is sometimes tired in his class. After his nap in the car, he gets a second wind, has a small snack and is ready to do his homework at around 5pm when he takes his second dose.

jrigone
02-18-11, 02:49 PM
Hi MIchelle~
I have an 11 year old that has been on Intuniv for about 4 weeks. It is by far the best for controlling his impulsive mouth and temper. I agree that the best thing about it is mornings! He actually converses, eats, and gets ready for school without arguing! It helps his attention somewhat, but the irritability was what we were really trying to help him with. My one concern is that he is starving all the time and has gained 5 pounds! He is still fine because after 2 years of Vyvanse, he was pretty thin. I hope it is just recovering from the appetite loss from the stimulant and not a side effect of the Intuniv.....
csmom
CSMOM,
Now is your son taking the the intuniv stand alone or is he still taking the Vyvance also?

jrigone
02-18-11, 02:54 PM
My son has been on Intuniv for 4 months now. So far we are very pleased with the results. He started out a 1mg. We were going to increase after a week but waited almost a month instead. He was very tired for the first 3 days and then the fatigue dissipated. He were seeing good results but it stopped working around week 3. We then increased to 2mg and we are still on that dose. We love love love most of the results we are seeing (better focus at school, less aggression, better social interaction). The only downfall to the 2mg is that he still has the fatigue. It usually sets in after he is home from school. If possible we let him take a nap(unheard of before the meds) for 30 minutes (no problem with bedtime on nap days either). That seems to help a bit. Homework can still be a chore because of the crankiness, but I try to spread it out a bit during the afternoon to make it go smoother. I asked the Doc about the fatigue but he didn't think there was anything we could do to counteract the fatigue, except possibly upping his bedtime so he gets more sleep. I just took him to the ped yesterday and he is checking his blood sugar levels and iron levels, just in case it is not the Intuniv. I, personally, plan on keeping the med even if this continues because I feel the benifits outweigh that one negative. If the fatigue starts affecting him at school then we will have to look at something else.

IS he taking any other meds at this time or just the intuniv?:cool:

Kitten17
03-15-11, 11:29 PM
hi, I am 17, and have been on intuniv for a few months. and for many of you I suppose having a person who is on this drug would help you to understand.

As far as the sleepyness, yes, it is there, but you (the one on it) probabyl won't feel it. It feel normal to me, but that is because i had depression with my ADD and OCD (for me intuniv helps a little with OCD, as with my OCD affects my ability to focus) It may go away, but it may not, I notice that i am sleepy more, but i got used to it, and it feels normal to me now.

I do sugest that you follow the "do not take your child off of intuniv unless you notify a doctor" warning. My pharmacy happened to mess up a few of my orders, and didn't send the intuniv, so i had to wait and i went through withdrawl at least twice in the past 6 months. (trust me not fun!!!)


As far as weight gain, I have noticed that i have not been able to loose weight as easily (stuck at 157.8lbs (at 5ft 6)) so I suppose that there could be weight gain from that.

i would like to know if anyone else has experienced weight gain.

amazmama
03-18-11, 05:10 PM
My son has been on Intuniv 1mg for 1 month now. We previously tried adderall xr, concerta, and vyvanse, all of those made him anxious and irritated and terribly mean, not to mention his teachers did not see improvement. On the intuniv he seems balanced out to me. He is sweet, does not fight with his sisters, his manners have been better and most importantly to me, we can have a conversation without a very lound and long tantrum resulting, he listens , understands what I am sayind and actually thinks before responding. I have not gotten any amazing comments from his teachers, but I have not gotten any negative ones either. He is on the lowest dose, and may need to move up, but things are pleasant and manageble , and he is happy.Hope this helps.

kit-kat
03-18-11, 07:24 PM
Okay, so we are into month 5 I think of Intuniv. DS is still on the 2mg dosage (no other meds). It really has been a huge improvement for us, but this may be over. Some of his previous problems have popped up recently (ie: more short tempered, out of seat more, voice level louder, more easily frustrated, not as receptive). I took him to the Doc yesterday to talk it over, and he feels we need to wait another month before we decide to increase the dose or add another med. Fingers crossed that he balances out soon, doubtful, but we'll see. :)

bunkie68
03-18-11, 11:18 PM
My son tried Intuniv. It seemed to work to some extent at 2 mg, so we bumped up to 3 mg. And it sopped working. He might as well have been eating a bag of Skittles for all the good it did. Of course, every ADHD medication he's tried has either had horrid side effects or simply not worked, so I'm probably not the best case to judge by. :)

romeow
04-15-11, 09:36 PM
My has been on intuniv for about a month. He rocks a lot when he gets excited and has trouble paying attention in class. With the 1mg intuniv we saw a decrease in his rocking, but it gradually came back with the 2mg. In class there has been a little improvement with being able to work longer on work. Once on the 2mg he started getting constipated and not sleeping and being scared. Which before intuniv.. he slept like a log every night. He also was very sleepy after increasing the mg for a few days. He seems more inactive to me and drowsy during the day. The doctor says he thinks his mg is too much and is decreasing it to 1 mg, which i don't think is going to do much good, but think he maybe slowly taking him off of it. My son has anger, fustration, and moodiness issues at home, but not at school. Was hoping this medicine would help, but think it may have made them worse. So we're not sure where we're going from here.

romeow
04-17-11, 07:14 PM
My son is on intuniv and when he started it he was very tired.. even falling asleep during recess. Then when we increased it to 2mg he was really tired the first few days.. it got better.. but his eyes still look heavy. He seems to become more inactive and not want to play outside or join in with others anymore. Also before he slept like a log.. now he is scared all the time and does not sleep through the night every night. It has helped a little with focus in school. He rocks a lot and in the beginning his rocking stopped.. now it has come back. Also at home he gets very fustrated, angry, emotional, moody. Was hoping this medicine would help these behaviors but have not seen any at all. The doctor thinks that 2mg is too much since he is still tired and becoming inactive so we are decreasing him to 1mg. Not sure where we're going from there.

Ruffals123
06-04-11, 05:58 AM
Hi MIchelle~
I have an 11 year old that has been on Intuniv for about 4 weeks. It is by far the best for controlling his impulsive mouth and temper. I agree that the best thing about it is mornings! He actually converses, eats, and gets ready for school without arguing! It helps his attention somewhat, but the irritability was what we were really trying to help him with. My one concern is that he is starving all the time and has gained 5 pounds! He is still fine because after 2 years of Vyvanse, he was pretty thin. I hope it is just recovering from the appetite loss from the stimulant and not a side effect of the Intuniv.....
csmom
Just curious, has your child's weight gain continued? My daughter has been on Intuniv for 1 yr & 2 months and has gained 30 lbs. She is 7 yrs old & started out thin when she started Intuniv now she is very chubby & I am considering switching to a stimulant. However, the Intuniv was amazing!!! She is happy, able to focus, social & no raging or anger. I'm afraid to switch her meds but feel I need to because of the severe weight gain.

happytexas
06-04-11, 10:59 AM
Just curious, has your child's weight gain continued? My daughter has been on Intuniv for 1 yr & 2 months and has gained 30 lbs. She is 7 yrs old & started out thin when she started Intuniv now she is very chubby & I am considering switching to a stimulant. However, the Intuniv was amazing!!! She is happy, able to focus, social & no raging or anger. I'm afraid to switch her meds but feel I need to because of the severe weight gain.

Sometimes a non-stim and a stim are given together to get the best results. We tried that to deal with ds' tics but he didn't respond well to Intuitiv. If you try a trial over the summer you may be able to work something out before school starts again.

pc2345
07-09-11, 08:57 PM
I am new here on this forum and have ADD, myself. I came across this article on PubMed, by accident and thought that people might want to have this information. It mentions guanfacine, particularly in the discussion section.
http://www.ncbi.nlm.nih.gov/pmc/articles/PMC2769050/?tool=pubmed (http://www.ncbi.nlm.nih.gov/pmc/articles/PMC2769050/?tool=pubmed)

Tracy23
07-10-11, 02:35 PM
My 6 year old has been on Concerta but was still struggling academically. He started on 2 mg of Intuniv (in addition to the Concerta) and we've seen a huge improvement. He tested before Intuniv on a beginning reader level (Kindergarten level reading even though he's in 1st grade) and 1 month after the start of Intuniv scored a 244 out of a possible 300 on the same reading tests. His class ranged from 150-300 and he scored a 244. So proud!

small
07-18-11, 01:42 PM
My son is starting intuniv today along with his regular dose of vyvanse. I was beginning to have some trouble with him during the morning hours along with vyvanse seeming to wear off earlier (I think he may need a bump but psyD wants to see if this combo will help). We needed a booster for soccer and CCD classes this fall and dr was hesitant to go that route so she wants me to try this now to see if we can get him on track for school. He does fine in class with vyvanse alone however I needed something for after school with his activities. We are worried how the booster may affect sleep so we'll see if this helps him any...

I hope this helps...I'm a little nervous to put two meds together...

lackman24
07-24-11, 01:53 AM
my son is 6 and has been on it for a month. He is a little more focused at school, but he is pretty irritable. We stopped at 2mg to see what school was like. seemed to be working,but he is definitely a little more bad tempered than he was. does it get better? is there a lessening as they move up the dosage? it took a few weeks for him tog et past the sleepiness of 2mg and i am loath to up it, if it does nothing.
help please! thx
Hello I saw your post my 6 year old is currently taking Focalin XR15 mg and 2 mg intuniv. He has been on the 2mg for almost 3 weeks now and seems so sad and moody. Did it ever get better for your child?

lackman24
07-24-11, 01:59 AM
My 6 year old son has been on intuniv 2mg for 3 weeks now along with his regular Focalin XR 15mg. At first it was greta but now he seems very moody and depressed, everyday. Has anyone else experienced this? I am thinking that i would rather see my slightly hyper energetic kid on just his Focalin verus major depression.:(

Itsjustmandi
10-04-11, 03:04 PM
Hi, I'm new here on this forum. I wanted to share my experience with Intuniv. We started it as the first ever medication after my 7 year old son was diagnosed with ADHD combination. He had actually been sort of kicked out of his last school due to behavior. So now here we are at the beginning of a new year and we start him on Intuniv. At first we saw immediate results as we tried the 1mg. He was calmer and more compliant. We bumped up to 2mg and saw great results... home life was better, no meltdowns over homework and he was able to get ready in the mornings and at night with hardly any fussing. Impulse control was getting better but not at school.

By the way - grades were stellar no matter how his behavior was. We saw that the 2mg might not be enough for him as his reports came back from school with lots of complaints about behavior. So we upped the dosage to 3mg. AHHHH!!! Miracle drug! It was like a brand new kid! We had about 4 days of side effects which included stomach pain, constipation, drowsiness and getting weepy for about 15 minutes in the evening. Then the side effects wore off and you would never know he was drugged! He was this great kid who was compliant and funny and energetic but controlled. He was playing soccer and keeping his head in the game and making friends and the emails had all but stopped from his teacher.

Then after about the 2nd week of the 3mg dose, it just sort of wore off. I was crushed. I felt like we were so close to having a somewhat normal life and now? So they have added 10 mg of Focalin ER and it is a nightmare. Reports from school about him doing crazy impulsive stuff, he is so OCD right now and frightened very badly at night. He is more anxious and emotional and he can't concentrate to even get dressed in the mornings or at nights. He gets crazy wild sometimes and just acts like a lunatic. All of this would be like he normally was with no meds except it's like all of his weird behaviors are now unpredictable and intensified, if that's even possible.

I wish the Intuniv would have just kept working. It was awesome. I am so sad that we have to do more experimenting now. And his crazy teacher has no idea what to do and seems to have no experience at all and keeps emailing us that he can't stop talking out in class or raise his hand like the OTHER KIDS. It irritates me to no end. I want to say, well, what would you do if you were taking a million different types of drugs and you were having crazy side effects but you couldn't come off of it because you can't cold turkey stimulants? Grrrrr.... I hope we can get this figured out soon or I might have to go up there and have a COME TO JESUS meeting with that lady. :eek:

Old School MBD
10-04-11, 04:32 PM
On generic guanfacie.....good stuff worth looking into.....no notable side effects

small
10-04-11, 11:25 PM
We are still on 1mg intuniv in combination with vyvanse 40mg. I do have him just on intuniv on the weekends if he has no sporting activities though and he's been fine. Definitely NOT like he is when he's on the combo but he's still calm and compliant but just more fidgety and unable to sit still for as long.

I forgot to give him the intuniv today and he had a HORRIBLE day at school. I'm not sure if this was the contributor as he also didn't go to bed until 1130 last night (ever since upping the vyvanse he's been unable to sleep at his normal time even with melatonin :(). He had his worst day yet behavior wise of 1st grade.

I like intuniv and will definitely continue with it in combo with his stimulant. Its fine to use it on weekends or days off of school...his appetite is better and he sleeps like a champ when he doesn't take the stim. But alone he wouldn't be able to function near as well at school. I highly doubt he'd be able to focus as much and definitely wouldn't be able to sit in his seat very well. His side effects from it have worn off and he's not tired or near as moody on it. He has his days though just like any kid does. Overall though he's definitely better on it than off.

Peyten24
01-25-12, 04:37 PM
Yes, my nine yr. old daughter with ADHD was on Intuniv last yr. The side effect for her was horrible. It caused her to have extreme sleepiness, she would fall asleep during the day, in class and looked extremely tired throughout the day. She would get 7-9 hrs. of sleep each night and round 11am, the tiredness would kick in. She was on for approx. 6weeks and I had to take her off. I was afraid to send her to events w/o me for fear that she would go into this sleep state. Sorry, rushing at work. Interesting how others have had success though.

aimlesss75
05-29-12, 10:16 PM
My son has been on intuniv for 2 years, he started out on adderall also, however the adderall seemed to make him very mean and moody. He has been on 4mg Intuiv alone now right at 2 yrs. He gained right at 30 pounds and is in a very high percentile for a 9 yr old. He is very active and self concious about his weight and is now showing symptoms of diabetes. I have an appointment tomorrow to get him checked. Diabetes doesn't run in either of our families so it makes me wonder about his wieght gain and the med
anyone else have this???

ccom5100
05-30-12, 09:11 AM
My son has been on intuniv for 2 years, he started out on adderall also, however the adderall seemed to make him very mean and moody. He has been on 4mg Intuiv alone now right at 2 yrs. He gained right at 30 pounds and is in a very high percentile for a 9 yr old. He is very active and self concious about his weight and is now showing symptoms of diabetes. I have an appointment tomorrow to get him checked. Diabetes doesn't run in either of our families so it makes me wonder about his wieght gain and the med
anyone else have this???

My ds has been on Tenex (short-acting version of Intuniv) for about a year and a half. We haven't seen any problems with weight or diabetes. 30 pounds is a lot to gain in 2 years for a 9 year old. HBO just recently showed a documentary called "The Weight of the Nation." Parts of it addresses the increase in obesity and diabetes among children. Does your son eat mostly carbohydrates and sugary foods? The documentary talked about the high caloric, high carb lunches that are served in schools, and the sugary cereals that are marketed as "healthy grains." Soft drinks are also a main cause of obesity and diabetes.

LynneC
05-30-12, 11:28 AM
My son has been on intuniv for 2 years, he started out on adderall also, however the adderall seemed to make him very mean and moody. He has been on 4mg Intuiv alone now right at 2 yrs. He gained right at 30 pounds and is in a very high percentile for a 9 yr old. He is very active and self concious about his weight and is now showing symptoms of diabetes. I have an appointment tomorrow to get him checked. Diabetes doesn't run in either of our families so it makes me wonder about his wieght gain and the med
anyone else have this???
My son also gained weight while on Intuniv. I think this is a fairly common side effect, which means that you may need to be extra diligent about diet and making sure he's eating as healthy as possible...

vickirush
07-23-12, 04:42 PM
My daughter started Intuniv six months ago and she has gained a tremendous amount of weight. The doctor told us that the Intuniv was not the culprit. She, too, is now being tested for diabetes. The only change in her life style has been Intuniv and Lexapro. I found nothing to substantiate weight gain on Lexapro, but to my surprise, kids gaining a lot of weight while taking Intuniv. With the exception of the weight gain, Intuniv has changed her life for the better (ours too!). I am stumped as to what to do for her ADH, ODD, and high anxiety.

ccom5100
07-23-12, 07:47 PM
For those of you whose children gained weight on Intuniv, were they on stimulants prior to that? If so, switching to Intuniv might have just brought their appetites back, after being suppressed by the stims. My DS didn't take any meds before Intuniv and he hasn't gained any significant weight.

LynneC
07-24-12, 08:47 AM
My daughter started Intuniv six months ago and she has gained a tremendous amount of weight. The doctor told us that the Intuniv was not the culprit. She, too, is now being tested for diabetes. The only change in her life style has been Intuniv and Lexapro. I found nothing to substantiate weight gain on Lexapro, but to my surprise, kids gaining a lot of weight while taking Intuniv. With the exception of the weight gain, Intuniv has changed her life for the better (ours too!). I am stumped as to what to do for her ADH, ODD, and high anxiety.
My son also gained weight on Intuniv...

LEXANI
08-11-12, 11:00 PM
Hi, I am new to this forum and am looking for some advice. I have read alot of the posts and am considering intuniv.

My son is 5yrs old and has so far been kicked out of 3 preschools due to his aggressive behavior of hitting, biting, kicking, etc..both teachers and students. He has been on Methaloine, Focolin and is currently on Vyvanse. All of these meds have made his aggression, behavior and attitude worse. His psychiatrist has also had him on risperadal, prozac, abilify and now zypreca to help control his anger/aggression. I think it might be time to switch to a non stimulant medication.

I am at the breaking point and feel we are losing the battle. He see's a psychiatrist, psychologist and a behaviorist. None of the professionals have been able to find the right mixture of medications yet. We have been fighting this battle for 2 yrs now. He starts kindergarten in a few weeks (public school) and considering he has been kicked out of 3 preschool's already, I am so terrified of the potential issues.

Has anyone used intuniv with zypreca?

ccom5100
08-12-12, 09:42 AM
Hi, I am new to this forum and am looking for some advice. I have read alot of the posts and am considering intuniv.

My son is 5yrs old and has so far been kicked out of 3 preschools due to his aggressive behavior of hitting, biting, kicking, etc..both teachers and students. He has been on Methaloine, Focolin and is currently on Vyvanse. All of these meds have made his aggression, behavior and attitude worse. His psychiatrist has also had him on risperadal, prozac, abilify and now zypreca to help control his anger/aggression. I think it might be time to switch to a non stimulant medication.

I am at the breaking point and feel we are losing the battle. He see's a psychiatrist, psychologist and a behaviorist. None of the professionals have been able to find the right mixture of medications yet. We have been fighting this battle for 2 yrs now. He starts kindergarten in a few weeks (public school) and considering he has been kicked out of 3 preschool's already, I am so terrified of the potential issues.

Has anyone used intuniv with zypreca?


Your son's story sounds very familiar. By the time he was 3 1/2, my ds was kicked out of 3 day cares/preschools for the same exact reasons as yours.

Since he was so young, I didn't want to give him meds so I searched for alternative treatments. I started him on a diet free from chemical additives (artificial colors, artificial flavors, and certain preservatives). I also found that he reacted to high fructose corn syrup and some fruits that were high in salicylates. He was able to make it through elementary school by following those guidelines, and participating in play therapy sessions.

When he entered middle school, he needed some help with impulsive behavior, so we tried a stimulant, which had the same effects on him as they did on your son. He is now taking Tenex (short-acting version of Intuniv), while still following his additive-free diet. He attends a demanding charter prep school and is doing very well.

It might be worth a try to see if your son is also affected by those chemical additives. Feel free to read the articles under my signature line and to send me a private message if you want more information about the program we follow.

CheekyMonkey
08-12-12, 09:47 PM
Hi, I am new to this forum and am looking for some advice. I have read alot of the posts and am considering intuniv.

My son is 5yrs old and has so far been kicked out of 3 preschools due to his aggressive behavior of hitting, biting, kicking, etc..both teachers and students. He has been on Methaloine, Focolin and is currently on Vyvanse. All of these meds have made his aggression, behavior and attitude worse. His psychiatrist has also had him on risperadal, prozac, abilify and now zypreca to help control his anger/aggression. I think it might be time to switch to a non stimulant medication.

I am at the breaking point and feel we are losing the battle. He see's a psychiatrist, psychologist and a behaviorist. None of the professionals have been able to find the right mixture of medications yet. We have been fighting this battle for 2 yrs now. He starts kindergarten in a few weeks (public school) and considering he has been kicked out of 3 preschool's already, I am so terrified of the potential issues.

Has anyone used intuniv with zypreca?

If he has childhood bipolar, it would make sense that stimulants make it worse. I know that it really typically isn't diagnosed that young, but I would look into it.

Here are some symptoms of early-onset bipolar

http://www.nimh.nih.gov/health/publications/bipolar-disorder-in-children-and-teens-easy-to-read/what-are-the-symptoms-of-bipolar-disorder.shtml

Children and teens having a manic episode may:
Feel very happy or act silly in a way that's unusual
Have a very short temper
Talk really fast about a lot of different things
Have trouble sleeping but not feel tired
Have trouble staying focused
Talk and think about sex more often
Do risky things.

Children and teens having a depressive episode may:
Feel very sad
Complain about pain a lot, like stomachaches and headaches
Sleep too little or too much
Feel guilty and worthless
Eat too little or too much
Have little energy and no interest in fun activities
Think about death or suicide.

Are there any thoughts on that from your doctors?

LEXANI
08-13-12, 11:01 PM
CheekyMonkey,

Thank you. It is interesting you mention the bipolar. His doctors and I have been talking about that possibility, but as you said he is way to young to diagnose. He is on zyprexa which is a bipolar med. I have decided to try him on intuniv, tonight was his first dose. Hopefully we see something soon.

Alot of the bipolar symptoms describe him perfectly.

CatKidDogLady
01-23-13, 01:39 PM
My son has been on Intuniv for 4 years. He had very adverse reactions to the stimulants early on (tics, insomnia, etc.), but Intuniv seemed to be the answer. However, my son has gained an alarming amount of weight since taking it! The doctor insists year after year that it's not the medication, but I really think it is. His appetite has been insatiable on this drug. I try to keep only healthy snacks in the house, but he will eat like 4 times what he should. He will fight with me over food, and hide food in his room. This kid never had a weight problem or an obsession with food before Intuniv. I feel like we're in a catch-22. Without this med, he can't function at school. But on the med I worry about his health and his psyche because kids call him fat. My doctor says to choose the lesser of 2 evils. Not helping! Anyone?

owl727
02-11-13, 11:03 PM
I agree on the weight gain with Intuniv. They say it is a "rare" side effect, but clearly not! (Actually I just posted a question asking for input on weight gain on Intuniv because I didn't see this thread. We will see what responses I get after the moderators review and post).

My son has gained almost 15 pounds in a little less than 6 months (and only grew one inch during that time so it wasn't a growth spurt!). The only change during that time? Intuniv! He was never on stimulants alone long enough to affect his appetite. I am SERIOUSLY considering discontinuing it. Just hope my son can manage taking the Focalin XR he is on without it. I may have to give him something to help him sleep...melatonin, something. I just cannot let my child gain weight like this. He is only 6 yrs old and never had a weight problem before this. It is not necessarily what he eats or the quantity either. I seriously think it has somehow altered his metabolism or glucose processing. Luckily we are only on 2mg so weaning off shouldn't be a problem. Just pray he can tolerate it. UGH so sad when you find something that works but you have to quit for other reasons.

fiddlebug86
02-21-13, 01:51 AM
hello I'm new to this site. I'm 18 yrs old and I was diagnosed with just ADHD when I was in 1st grade. I've used mostly Concerta until the end of my senior year of high school. I had basically maxed out the normal tolerance of concerta. I think I took 54mg in the morning and 36 in the afternoon. It was too much medicine in my body (I'm less than 100lbs, but short).not sure why no one told me that before..but anyway, I had to find a psychiatrist that would help me find a new medicine. I started using the patch, Daytrana and now I'm at the max for that, but I'm happy with it. But my doctor wanted to try Intuniv.

I started w/ 1mg, then 2mg, and finally 3mg and even 1mg in morning and 2mg at night--while on the 30mg Daytrana Patch. At first, the Intuniv seemed okay--no adverse symptoms. But then, the dry mouth and drowsiness began. I have a lot of anxiety/frustration and impulsitivity. I'm definitely on the extreme end of ADHD. So I did notice that before I interrupted someone, I was consciously aware of what I was doing--which is incredible because that never happens with me. I still was impulsive, but I was significantly calmer. The reason? because the intuniv sedated me. I would fall asleep/feel drowsy in class, doing hw, watching TV on a Sat afternoon. And especially, in the mornings. I don't drive yet because of my anxiety, though I want to learn. But the first thing I had to do was get my medicine situtated and Intuniv was too powerful of a drug. I drank water constantly and ate mints--it became extremely annoying. My behavior changed positively in that I was less argumentive and irritable, but I didn't feel healthy. Feeling tired all the time is never good.

Personally, I've always had a good appetite, with concerta too. But Concerta and Daytrana has never made me drowsy. And splitting the 3mg dosage to 1mg in morning and 2mg at night just caused worse symptoms.

That was my experience... I just thought the symptoms were unmanageable andrew benefits/improvements must be achievable through other means...

jordn0007
02-21-13, 04:24 AM
sorry i dont have more exp. on this...

rlolarun
05-03-13, 01:23 PM
Hey everyone :) My son has just been diagnosed with ADHD and anxiety, has tics and high blood pressure so they're thinking of starting us with Intuniv. He has been doing well in Behavioral Cognitive Therapy, but still has outbursts when he gets frustrated or angry (but mostly frustrated) where he hits and screams and then feels terrible afterwards. He only has small problems with the hyper activiity; he hums and bounces a little in his seat but isn't up running around the class room. Very indecisive, though, as he is a perfectionist and while some of his behavior is very impulsive, making a difficult decision can put him into analysis paralysis that frustrates him to no end. I've had him on omega 3s for about two months now, and he's working very hard at trying to use the tools he has worked out with his therapist, but it just isn't enough. The fact that he CAN'T control it is breaking down his self esteem and he needs some help.

I am very wary, not of medications, but of the wrong medications. I know it is a process and I'm trying to prep myself for the long trial and error phase, but having gone through a childhood where I was misdiagnosed over and over before finally finding treatment (for OCD) that worked for me at 16, the thought of putting my boy through that has brought me down 15 pounds :P

I guess I'm curious at the success rate for a low dosage of stimulent combined with Intuniv, as it looks like that may be the eventual trajectory. How have people done with that? Those with Tics? It just seems like there's a precedent for the medication working really well at first, but then the weight gain/fatigue requires an added stiumlant element at some point?

Hml1976
05-03-13, 04:38 PM
Hey everyone :) My son has just been diagnosed with ADHD and anxiety, has tics and high blood pressure so they're thinking of starting us with Intuniv. He has been doing well in Behavioral Cognitive Therapy, but still has outbursts when he gets frustrated or angry (but mostly frustrated) where he hits and screams and then feels terrible afterwards. He only has small problems with the hyper activiity; he hums and bounces a little in his seat but isn't up running around the class room. Very indecisive, though, as he is a perfectionist and while some of his behavior is very impulsive, making a difficult decision can put him into analysis paralysis that frustrates him to no end. I've had him on omega 3s for about two months now, and he's working very hard at trying to use the tools he has worked out with his therapist, but it just isn't enough. The fact that he CAN'T control it is breaking down his self esteem and he needs some help.

I am very wary, not of medications, but of the wrong medications. I know it is a process and I'm trying to prep myself for the long trial and error phase, but having gone through a childhood where I was misdiagnosed over and over before finally finding treatment (for OCD) that worked for me at 16, the thought of putting my boy through that has brought me down 15 pounds :P

I guess I'm curious at the success rate for a low dosage of stimulent combined with Intuniv, as it looks like that may be the eventual trajectory. How have people done with that? Those with Tics? It just seems like there's a precedent for the medication working really well at first, but then the weight gain/fatigue requires an added stiumlant element at some point?

Hi there. So my son started on Intuniv about a year ago (he was on Tenex for a few months first) and hasn't had a tic since then. We actually took him off meds completely about two weeks ago and the tics have yet to reemerge so we are hopeful that he's outgrown them. Our son did not do well with stimulants but most children do just fine if they find the right one. The intuniv helped with self control and the hyperactivity mostly but over time we noticed that he had some new issues, crying fits, rages, stuff that we never had to deal with before. We lowered his dose to 1mg in February and the problems went away immediately. After discussing with our doctor we are trying no meds along with a strict diet that we've done for quite some time. So far it's not perfect but going well in general.

Sorry kind of rambling :) but yes, intuniv worked for the tics and somewhat on impulse control, but watch for longer term side effects, although many kids take intuniv for years without issue.

rlolarun
05-04-13, 07:32 AM
Thank you :) We will definitely keep an eye on it. His half brother also has ADHD and had a bad time with Strattera, but has actually done okay with Adderal (He does not have Tic problems or high blood pressure) Now he's 17 and like a completely different kid. He only has to take his adderall on school days. I remember when he was 8 and his time with us during the summer was so stressful for me because I didn't know what he was going to do next! (Which clashed with my OCD pretty well, heh)

Today we are going to a birthday party (four days after diagnosis) and I am worried. He is SO excited; he rarely gets invited to parties because he doesn't have many friends. Though I will make my best efforts to give him some calming thoughts beforehand and be very 'on task' for being there as a reminder, we will just have to see how this goes. He's actually never lashed out at a birthday party before, but lashing out is actually a new coping mechanism. When he was younger he would just get overwhelmed and withdraw. This may be a very different experience :P

Davennikki
08-16-13, 02:03 AM
Hi I'm new on here but my 7 yr old son just started taking Intuniv. He is very tired and really not himself. It's like he is lost. It's is only day 2. Does it get better? We can't do any stem med do his seizure .

So what is the normal effects if he stays on Intuniv is he going to be this zombie or will I get my funny little boy back?

I just hoping for a light at the end of the tunnel. With the autism ,seizure, and all the learning delays he has I just want the best for him. I want him to do the best for him

So I'm rambling sorry so anything you can pass on what you have learned will be great!!

Thank nikki

zette93
08-16-13, 12:56 PM
With this med there is an adjustment period and it should get a lot better the 3rd or 4th day. DS has changed dosages up and down a number of times, and for him the 3rd day is always the worst. The first time the school called me to come get him because he fell so deeply asleep they couldn't wake him. When I took him to the car he stumbled as if drugged. The next day he was perfectly fine, his normal personality resumed.

If the tired, glazed look persists more than a week, see his doctor about changing the dose. When DS was on too high of a dose, he couldn't run more than 10-15 yards, had terrible constipation (requiring daily miralax to manage), and would function ok at school but be glazed and a little spacey. At the right dose, there seems to be no change DS's personality, just a reduction in impulsive behavior like running off in a store.

Davennikki
08-17-13, 02:10 AM
With this med there is an adjustment period and it should get a lot better the 3rd or 4th day. DS has changed dosages up and down a number of times, and for him the 3rd day is always the worst. The first time the school called me to come get him because he fell so deeply asleep they couldn't wake him. When I took him to the car he stumbled as if drugged. The next day he was perfectly fine, his normal personality resumed.

If the tired, glazed look persists more than a week, see his doctor about changing the dose. When DS was on too high of a dose, he couldn't run more than 10-15 yards, had terrible constipation (requiring daily miralax to manage), and would function ok at school but be glazed and a little spacey. At the right dose, there seems to be no change DS's personality, just a reduction in impulsive behavior like running off in a store.




Thank you for sharing makes me feel better. I don't like the haze that he has been in for the last few days you give me hope.

Mom2GnJ
08-17-13, 10:29 PM
My 6yo is on Intuniv. He's pretty angry in the afternoons the first few days ( he takes it at bedtime). He does better in school with it, though.

Danihope
08-18-13, 04:34 PM
We tried Intuniv in conjunction with stimulant meds. It didn't work well for us. It made my son very depressed in a short time. I am wondering though, if we might consider trying it again after reading everyone else's posts on it.

Chinamom
08-18-13, 07:58 PM
Hi. My dd is also n Intuniv 3 mg. I haven't seen any difference, except in the mornings. Still on the med merry go round. Ugh.

vabronxboogie
08-30-13, 04:29 AM
i'm a mother of a 4 yr old son. It broke my heart to get told my son was diagnosed this year with adhd. We first had him on tenex... he was still acting out. Being rude, hitting, spitting, etc. We added methylphenidate (5mg) along with tenex (5mg). methylphenidate in the morning and in the afternoon, the tenex at home with me. Still nothing. we then switched the tenex to go together in the morning with the methyphenidate. It was ok but still acting out. I was getting scared because he's about to start preschool. I requested a longer lasting medicine. They uped his methylphenidate to 10mg (pill form this time,, I crush it) and did away for the tenex, but then we tried intuniv (pill form), found out I couldnt crush these and I was panicking but I googled ways and found yogurt or applesauce is easy to swallow that pill. I started him on intuniv on Monday 26, 2013 with me first.

I didnt see a change but then again my son is more my son at home, not at daycare. Monday and Tuesday was really tough. He was hitting spitting, etc. I had enough. I had to be stern. I bought him a watch that vibrates 10 times to remind him think before he has bed behavior. Wed Aug 28, 2013 and thursday aug 29 the daycare told me he was GREAT!!! Usually everyday the owner of the daycare as to go into his class everyday to calm down. He has multiple melt downs, but he was great. I just have to be consistent. I know these meds aint a miracle pill, I have to get involved too. My son reminds me of the younger me. I too was adhd and now I believe I'm add. But the best part of my son being adhd is that I focus on him all the time. To build his social skills i'm purchasing a membership to these play places. The intuniv seemed to be working...It's too ealy to tell but with the watch reminding him, and the meds, and me focusing on the positives, he seems to be doing good. I'll post more after time. He takes the intuniv around 6pm

lclaire76
09-03-13, 07:26 AM
Hi there all.
Is this Intuive a slow release? My son is 5 and on medikinet xl 20mg and the anget has gone out of control. He has ODD symptoms too. Thanks

ccom5100
09-03-13, 09:12 AM
Hi there all.
Is this Intuive a slow release? My son is 5 and on medikinet xl 20mg and the anget has gone out of control. He has ODD symptoms too. Thanks

Intuniv is a non-stimulant med. It mostly addresses the hyperactive and impulsive symptoms of adhd. It is taken once a day and it builds up in the system, unlike the stimulants. Therefore, in order to stop the med after using it for a time, you would have to titrate down and wean off it. The actual medication in Intuniv is guanfacine, which was originally prescribed for high blood pressure.

ConcertaParent
10-08-13, 04:26 PM
For those in Canada, Intuniv may finally be available (http://www.hc-sc.gc.ca/dhp-mps/prodpharma/sbd-smd/drug-med/sbd_smd_2013_ituniv_xr_150741-eng.php).